Stigma research reveals its true extent and impact on people with lung disease

October 26 2017

Community urged to think twice before judging those with lung disease to ease isolation and depression

New survey reveals stigma is rife, with many quick to lay blame without empathy, prompting call for greater understanding to break down the barriers to action.

The nation’s lack of empathy is confronting: Over a third (35%) consider people with lung cancer to be their “own worst enemy” who “have only themselves to blame.”

We’re quick to judge others but not ourselves: Over half of Aussies (58%) admit to being a smoker, or having smoked previously, however just 3% would consider it “deserved” if they were diagnosed with lung cancer.

Those who need our support, suffer instead: While one Australian dies every hour from lung cancer, a third feel isolated, 39% see their family and friends less often, and close to a quarter feel shame, guilt or fear of being discriminated against.

SYDNEY – THURSDAY, 26 OCTOBER 2017: Ahead of Lung Health Awareness Month next week, the Lung Foundation Australia has released new research that reveals, for the first time, the true extent of the stigma, lack of empathy and misconceptions that the Australian public hold towards those living with lung cancer, and other lung diseases. The findings were presented this week in Parliament House, as part of the Lung Foundation’s Parliamentary Friends of Lung Health event.

Shockingly, more than a third of Australians surveyed believe people living with lung cancer are their “own worst enemy,” who “have only themselves to blame.” One in ten Australians also believe that those with lung cancer “got what they deserved”.

Commenting on the findings of the nationally-representative survey, Heather Allan, Chief Executive Officer of Lung Foundation Australia, stressed “our research shows it’s clear we still have a lot of work to do when it comes to breaking down the stigma that lung disease carries. We must remember that lung disease can affect anyone.”

“We don’t lay blame or judgement on people diagnosed with other cancers or chronic health conditions that can be caused by lifestyle choices – it should be no different for lung disease.”

One Australian dies every hour from lung cancer, making it the leading cause of cancer death in Australia; more than breast, ovarian and prostate cancers combined.

And despite one in three women diagnosed with lung cancer and one in 10 men having no history of smoking, Lung Foundation Australia’s research found that for almost 40% of Australians, the first question they would ask someone diagnosed with lung cancer – without first expressing concern – is whether they were a smoker. Almost 90% of Australians believe smoking is the only lung cancer risk factor (despite other proven links including genetics, pollution and occupational exposure, for example).

Recently diagnosed with lung cancer, Associate Professor Nghi Phung, Director of Drug Health at Western Sydney Local Health District and an Addiction Medicine Specialist at Westmead Hospital in Sydney, is constantly compelled to reassure others that she had never smoked, due to the feeling of being judged by the community affected by the heavy stigma associated with lung cancer.

“It is this lack of empathy and understanding that can have a significant impact on someone’s mental health and wellbeing.”

“Whether we smoke, previously smoked, or have never smoked, we all deserve the same level of compassion and support. No one deserves this.”

“That’s why it’s so important to educate all Australians about the impact of lung cancer, and lung diseases more generally, given anyone can be affected.” said Nghi Phung.

In addition to surveying the general public about their understanding of, and attitudes towards, lung cancer and those affected, Lung Foundation Australia also asked a nationally-representative sample of its members who are currently living with lung conditions, such as lung cancer, Chronic Obstructive Pulmonary Disease (COPD) and bronchiectasis, how their respective conditions have affected them from a societal and emotional point of view.

Almost 60% said they ‘do the things they love,’ such as hobbies, less often, a third feel isolated, whilst 39% see their family and friends less often. Furthermore, close to a quarter felt shame, guilt or fear of being discriminated against, whilst 41% felt stigmatised by the view lung diseases are self-inflicted. These findings prove the ill-feeling expressed by the public is being felt by those with lung diseases.

Despite the heavy judgement directed at those with lung cancer, the broader consumer survey also revealed that despite more than half of Australians (58%) admitting to either being a current smoker, or having smoked in the past, as little as 3% would feel as though a diagnosis were deserved should they ever be diagnosed with lung cancer. A finding at direct odds with how they view others.

What’s more, more than half would feel scared (51.9%) and worried (53.4%) if diagnosed with lung cancer, while more than 40% would feel depressed (41.1%) or unfortunate (40.3%).

“Despite being quick to judge others, the reality is, when asked to reflect on how we would feel if ever diagnosed ourselves, many Australians admit to the fear and worry they would feel,” said Ms Allan.

“Just imagine how Australians who have actually been diagnosed with lung cancer feel.”

“Our own research has proven that those living with lung cancer, and other lung conditions, feel the effects of isolation and depression caused by their diagnosis – hence the need to encourage Australians to be more empathetic and informed. We are also calling on the Federal Government to ensure that adequate access to proven medications, policy and funding is available to enable early diagnosis, rapid referral and psycho-social support for those affected – given the scale of the issue,” Ms Allan explained.

“Lung cancer is a devastating diagnosis; it has one of the lowest survival rates of any cancer in Australia with just 15 percent of Australians alive five years after their diagnosis,” explained Professor Christine Jenkins AM, Chair of Lung Foundation Australia, Clinical Professor and Thoracic Physician.

“It is imperative, therefore – in order to improve outcomes – that we as a nation rid ourselves of the stigma we know is having a devastating impact on the funding, research and support needed for people living with lung cancer and other lung diseases.

We need to throw out these prejudices and ensure we are acknowledging and supporting people with lung disease.

“We know that Australians from all walks of life are not only living with the disease, but are feeling isolated and discriminated against.

“It’s imperative that we do all we can to ensure misinformation and stigma are no longer barriers to action and greater support,” concluded Professor Jenkins.

Lung Foundation Australia is urging the community to help break down the stigma and show people with lung disease that they matter too by visiting lungfoundation.com.au/understand.

About the consumer surveyThe consumer survey was conducted by independent research house PureProfile amongst a nationally-representative sample of 1,003 Australians for the Lung Foundation Australia. Financial support for the survey was provided by pharmaceutical company AstraZeneca Australia.

About the Lung Foundation Australia member surveyAn online survey was conducted by Lung Foundation Australia amongst 1,700 people in their patient network who are currently living with a lung disease such as lung cancer, Chronic Obstructive Pulmonary Disease (COPD), Idiopathic Pulmonary Fibrosis (IPF) and Bronchiectasis.

A snapshot of lung cancer in Australia

12,500 Australians will be diagnosed with lung cancer in 2017 – that’s 34 people every day.

One Australian dies every hour, making lung cancer the leading cause of cancer death in Australia; more than breast and prostate cancers combined.

Lung cancer has one of the lowest survival rates of any cancer in Australia; just 15 percent of Australians are alive five years after their diagnosis.

Lung cancer can affect anyone, not just smokers. One in three women diagnosed with lung cancer and one in 10 men have no history of smoking.

There is no regular screening test, and symptoms of lung cancer may go unnoticed by those living with the disease.

Non-Small Cell Lung Cancer (NSCLC) is the most common type of lung cancer, accounting for almost nine in 10 cases.